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sandy craine on 24 February 2021

Category: About CML

Replies: 5

Last updated: 26 November 2021

Original imatinib/Glivec packaging?
by Julia.K (Nov 26)

Hi, could anyone tell me pls if the branded Glivec is still available in the UK in special cases? If generic Imatinib does not work and you cannot take any second line TKIs (and asciminib as well)

by sandy craine (Mar 4)

Thanks John,
I have all those links and have forwarded them to the curator of the exhibition. Of course this will be about cancer rather than stand alone CML. That may happen at some future date,

by johnw1001 (Mar 3)

Hi Sandy,
We have been in contact.
I still have packaging for Glivec from 2007 when first dx plus a lot of other historical things like records of bloods on that dreadful day when given the bad news

by sandy craine (Mar 2)

Hi Buzz,
Thanks so much for trying that. I have contacted a couple of clinicians here in the UK as well as Brian Druker so I am hoping that will be fruitful. I am now regretting that I did not save
Category: About CML

Replies: 5

Last updated: 26 November 2021
Alan Locke on 23 November 2021

Category: Uncategorised

Replies: 5

Last updated: 25 November 2021

Saying hello
by sandy craine (Nov 25)

Interesting Youtube vid from Dr.John Cambell here re data from 3rd vaccine/booster.

by Richard42 (Nov 25)

As for paracetamol, I can’t see any harm in taking it. There are views pro and con as far as both paracetamol (metabolised in the liver, like imatinib certainly) and ibuprofen (a bit harsh on

by Richard42 (Nov 25)

I’ve had my booster and it was fine. All my doses were Pfizer and the only side effect I had was a sore arm.
Given your recent diagnosis I would definitely discuss it with your

by Alan Locke (Nov 24)

Thank you Sandy.
Hopefully, my second hospital appointment is just before my booster. I will ask about D3 levels.
I am finding the support site very helpful in understanding Cml. As a humble
Category: Uncategorised

Replies: 5

Last updated: 25 November 2021
Karthikeyan on 18 November 2021

Category: Uncategorised

Replies: 6

Last updated: 20 November 2021

About vitamin d
by scuba (Nov 20)

I take 500 mg vitamin C (sometimes twice a day)
I take 200 mcg selenium EVERY DAY, except when eating brazil nuts
I take 15-30 mg zinc every day.
Yes, I do think taking these strengthens the immune

by Karthikeyan (Nov 20)

Thanks scuba for answering.vitamin c,zinc, selenium have roles in immunity.do you think i should take these with vitamin d to further strengthen immune system.

by scuba (Nov 19)

"Even though I have better vitamin d than my wife. What could be the reason that she did not catch flu and I caught flu."
She's lucky!
(most likely she has residual immunity from a

by Vikram (Nov 19)

Hello karthikeyan
Immune system
Giloy juice

Wheatgrass juice
Immune system boost...
My experience.....
Category: Uncategorised

Replies: 6

Last updated: 20 November 2021
Batman0424 on 16 November 2021

Category: Blood tests

Replies: 5

Last updated: 19 November 2021

BCR Elevated from .09 to .18 after treatment stop
by scuba (Nov 19)

The fact that 70 mg has been rough is all more the reason her dose should be lowered. She is very sensitive to Sprycel and lower dose is best if lower dose works. The lower the better in fact.

by Batman0424 (Nov 19)

Thank you all for the feedback, this is very helpful and reassuring. My wife would prefer to be on a lower dose, hopefully that can happen soon. 70mg has been rough.

by kat73 (Nov 19)

I would also like to add that the difference in her test results is so miniscule - statistically insignificant - not worrisome at all. I have experienced what Scuba described - after a short

by scuba (Nov 18)

I had a very similar issue involving neutrophil suppression at 70 mg sprycel (dasatinib). I was taken off treatment until my counts recovered. Then restarted, then had to stop to allow counts to
Category: Blood tests

Replies: 5

Last updated: 19 November 2021
vonnie on 17 November 2021

Category: Uncategorised

Replies: 1

Last updated: 17 November 2021

WCB
by AlastairC (Nov 17)

Hi Vonnie
This subject was discussed on an old thread - link here.
Hope that's useful
Alastair

by vonnie (Nov 17)

Hi i have just had my 3 monthly consultation with my CML specialist and she has told me my white cell count has dropped to 1.5.I was told the lowest acceptable reading is 1.7 therefore it is planned
Category: Uncategorised

Replies: 1

Last updated: 17 November 2021
sandy craine on 12 November 2021

Category: Food & fitness

Replies: 3

Last updated: 16 November 2021

Why is Zinc Important?
by sandy craine (Nov 16)

I had never eaten oysters until a few years ago. I always thought they looked too slimy and unappetising, but how wrong I was!!! A friend who ran a Deli persuaded me to join an oyster and champagne

by scuba (Nov 16)

https://www.everydayhealth.com/pictures/best-food-sources-zinc/

In cold waters, oysters are a fantastic source for zinc.

by johnw1001 (Nov 16)

Hi Sandy,
What you have posted is backed up by other sources.I have just had a look again in the book by oncologist Professor Robert Thomas "How to Live" and he says "Zinc is an

by sandy craine (Nov 12)

Zinc - an essential mineral: signs and symptoms of deficiency
Category: Food & fitness

Replies: 3

Last updated: 16 November 2021
TimoD on 15 November 2021

Category: Treating CML

Replies: 2

Last updated: 16 November 2021

FDA approves asciminib (commercially Scemblix) in the US
by sandy craine (Nov 16)

The CML Support Group is one of the patient organisations involved in the upcoming NICE TA (technology appraisal) for asciminib for the NHS use as 3rd line therapy in CML.
Asciminib for treating

by johnw1001 (Nov 16)

Hi Timo,
Just to add a few points.FDA seemed to have given this tki fairly rapid approval -it granted so called breakthrough therapy designation in February 2020 and with a final submission made to

by TimoD (Nov 15)

https://www.novartis.com/news/media-releases/fda-approves-novartis-scemb...

Hi there
I did not find any news on this on this forum but there is a new kid on the block. It has a name -
Category: Treating CML

Replies: 2

Last updated: 16 November 2021
David Fitz on 28 July 2020

Category: Uncategorised

Replies: 4

Last updated: 16 November 2021

Help CML Support when you shop at Amazon
by Nimbus2 (Nov 16)

Hopefully, the commission from my purchases has been flowing through for some time. Perhaps, you could re-pin this thread.

by minwalles (Nov 15)

This is a great idea! I have always said that it is necessary to save money on purchases of any kind . I have been using it for a long time DontPayFull.com to search for promo codes for discounts

by David Fitz (Jul 31)

Thanks John! It all makes a difference.
I don't think Amazon Fresh (or Prime Now) counts - just the standard Amazon catalogue, but that's still a lot!
David.

by johnw1001 (Jul 31)

David,
As an avid user of Amazon I have subscribed to this scheme for some time;my latest total contribution to CML is nearly up to £30.The amount of support is quite small but if we
Category: Uncategorised

Replies: 4

Last updated: 16 November 2021
EvaH on 2 November 2021

Category: About CML

Replies: 3

Last updated: 16 November 2021

Leukemia / TKI use and disorders of the corpus callosum - anyone got experience?
by EvaH (Nov 16)

Update: tests and imaging still ongoing but medications that supress our immune system can give JC virus a chance to proliferate and cause something called PML - Progressive multifocal

by EvaH (Nov 6)

Thanks Buzz.
There's more imaging to be done to be sure, as there's also a harmless (congenital) lipoma in the picture, so to speak.
I do seem to be a magnet for the rare medical things.

by Buzzm1 (Nov 5)

EvaH, if you think it would help you could immediately lower your current Imatinib 200mg dosage to 100mg when you receive undetected on your upcoming Nov. 22nd BCR-ABL test, rather than waiting

by EvaH (Nov 2)

Hi all,
I have a lesion on my corpus callosum and the neurologist said it might have something to do with my CML meds (imatanib)
Anyone got experience with brain issues after CML?

thanks
Eva
Category: About CML

Replies: 3

Last updated: 16 November 2021
Costas on 25 November 2020

Category: Side effects

Replies: 9

Last updated: 15 November 2021

Hormonal or chemical imbalance?
by Costas (Nov 15)

Hi Sandy,
He did check me for B12 deficiency but that didn’t show in my blood test. I take injections of the vitamin anyway since I do feel it has a positive effect on me and has made a

by sandy craine (Nov 15)

Costas,
It's good to hear that you have not experienced any of the (caffeine induced) episodes. Did your clinician test you for B12 deficiency?
I am puzzled by the fact that you are taking 2 x

by Costas (Nov 15)

After about a year I am returning to this for an update. Since I have been taking B12 and folic acid, I haven’t had any more episodes as the ones I previously described. Initially I took B12

by Costas (Nov 28)

Hi Annie,
Thank you for taking the time to respond. I thought that reaching out to other CML patients might be the only way to make sense of what is happening to me. Your experience is kind of
Category: Side effects

Replies: 9

Last updated: 15 November 2021
Danmason11 on 13 November 2021

Category: Blood tests

Replies: 2

Last updated: 15 November 2021

First test after diagnosis - what am I looking for and what should I ask?
by Danmason11 (Nov 15)

That’s great. Thanks very much Alastair

by AlastairC (Nov 14)

Hi Dan,
At the top of this page there is a tab labelled "About CML". The first topic under that is "Just diagnosed". Click that link and you will get the distilled experience of

by Danmason11 (Nov 13)

Hi all
I was diagnosed in August and I have my first appointment with my consultant on Tuesday to go through my first blood test results. Just wondered if there were any suggestions or other threads
Category: Blood tests

Replies: 2

Last updated: 15 November 2021
Rosiem on 3 November 2021

Category: About CML

Replies: 11

Last updated: 13 November 2021

Macrocytosis and Sprycel
by Rosiem (Nov 13)

Thanks Nimbus 2,
That describes my response to Dasatinib to a tee. Will have a look at Trey's Blog.
RosieM.

by Nimbus2 (Nov 13)

A blogger in the USA refers to himself as "Trey" hence "Trey's Blog".
http://treyscml.blogspot.com/
His entry there on anaemia includes the following:
CML drugs do a good job

by Rosiem (Nov 12)

Thanks Nimbus for that information,
I will check with my Haematologist that my iron levels are good. Usually they only flag something if its outside the normal range.
Rosiem.

by Nimbus2 (Nov 12)

My GP and diabetic nurse do worry about my anaemia. The haematologists are generally not perturbed.
My haemoglobin is always low, as low as 111 in the normal range 130-162. Normally, the
Category: About CML

Replies: 11

Last updated: 13 November 2021
Nimbus2 on 13 November 2021

Category: Uncategorised

Replies: 0

Last updated: 13 November 2021

Retrospective study finds that cancer drug [dasatinib] also lowers blood glucose
by Nimbus2 (Nov 13)

This may be of interest to those of us who have diabetes type 2 as well as CML. My HbA1c stands at 6.0% which is very good. I take dasatinib 100 mg alongside metformin 2 g.
https://www.sciencedaily.
Category: Uncategorised

Replies: 0

Last updated: 13 November 2021
NV6 on 10 November 2021

Category: Drug-drug interactions

Replies: 2

Last updated: 12 November 2021

Can finasteride be used along with Nilotinib?
by NV6 (Nov 12)

Thanks for the info.. Its helpful

by sandy craine (Nov 12)

Just did a quick drug interaction check here, and according to this site the interaction between nilotinib and finasteride is -
MINOR
Interaction is unlikely, minor, or nonsignificant.

by NV6 (Nov 10)

Can we use finasteride 1mg along with Nilotinib 300mg twice daily for hairloss?
Category: Drug-drug interactions

Replies: 2

Last updated: 12 November 2021
Betty8 on 7 November 2021

Category: Blood tests

Replies: 2

Last updated: 12 November 2021

On the road to a transplant with a (3;21) translocation
by Betty8 (Nov 12)

Hi Sandy
Thankyou for your detailed reply. I had read about your history from other posts in this forum, it’s encouraging to hear of great positive long term outcomes.
I am due to move house

by sandy craine (Nov 9)

Jenny Byrne is an excellent and supportive clinician (and an expert in CML). From what I can understand t3;21 is extremely rare translocation in CML, so hopefully you can move your clinical care to

by Betty8 (Nov 7)

Hello,
I found out yesterday that I am starting the progress to have a transplant.
I was daiagnosed august 2020 and have since failed on Imatinib and Dasatinib… with my BCR ABL never
Category: Blood tests

Replies: 2

Last updated: 12 November 2021
NV6 on 7 November 2021

Category: Drug-drug interactions

Replies: 4

Last updated: 10 November 2021

Can finasteride be used for hairloss for cml patients using nilotinib?
by NV6 (Nov 10)

Thanks a lot NV6 is just fine

by David Fitz (Nov 10)

I have changed your username to “NV6”. When you login you can use this username or your email address - however only this username will be displayed to others.
If you would like it to be

by NV6 (Nov 9)

Could u please tell me the process ... all I can see is that edit option helps us to change the email id and password .. there’s no option to change the username

by sandy craine (Nov 9)

Please change your username to something other than your personal email address.
Category: Drug-drug interactions

Replies: 4

Last updated: 10 November 2021
MartinZA on 3 November 2021

Category: Treating CML

Replies: 11

Last updated: 10 November 2021

Encouragement for turtles
by MartinZA (Nov 10)

Thank you Tater1 - all the best for your recovery too!
Sorry - I've seen that all my messages are now collected at the bottom and not replies to individual responses!
Have a great week

by MartinZA (Nov 10)

Hi ColoradoGuy
Thank you for your message - I'm glad my story has been of some use. These bounces really cause us to feel worried and anxious, but it looks like you are on an overall

by MartinZA (Nov 10)

Hi Sandy and scuba
Thank you so very much for your responses to my post and for the encouragement and kind wishes. Sandy, your story helped me such a lot when I was first diagnosed, and it

by MartinZA (Nov 10)

Hi Timo
Sorry for the late reply - in between power outages and some crazy times at work, I haven't been back to visit the site. I agree with you that more and more people will become
Category: Treating CML

Replies: 11

Last updated: 10 November 2021
Kimbie3116 on 27 February 2021

Category: Treating CML

Replies: 6

Last updated: 9 November 2021

Help! Mouth sores with Imatinib???
by jonnie turpie (Nov 9)

Thanks Very much. I will try this.

Jonnie

by sandy craine (Nov 9)

Mouth sores/canker sores/sore tongue etc. can be a sign of vitamin B12 deficiency. Imatinib (or other TKI) may well be indicated in suppressing your red blood cells count - HGB, B12 can help support

by jonnie turpie (Nov 9)

Hi
I am sorry you are experiencing these mouth sores and hope you might be feeling better.
After 3.5 months of taking 400mg Imatintib I have developed a sore throat and mouth ulcers on the

by alexmcpee (Feb 27)

I’ve been having fairly persistent Geographic Tongue since being Nilotinib but no other mouth sores. This is defo TKI as they started when I started meds. They don’t hurt they are just a
Category: Treating CML

Replies: 6

Last updated: 9 November 2021
johnw1001 on 29 October 2021

Category: Blood tests

Replies: 6

Last updated: 6 November 2021

What does antibody testing for Covid tell us ?
by scuba (Nov 6)

Just to emphasize a key point - it's not about antibodies. It's about T-cells.

https://thepoliticsofduh.com/2020/09/27/t-cell-immunity-what-fauci-and-t...

T-cells is what protects you from

by johnw1001 (Oct 30)

Hi Christine,
So with the NHS test you presumably were not given a score?
Looking at some of the private ones such as Roche which some labs use the range in terms of the positive score is from 0.8 u

by Christine R (Oct 30)

Hi John
I was given an anti body test at me treating hospital and the result was half that of a normal healthy person but there is still not a level that i am aware of that is known to be an optimal

by scuba (Oct 29)

https://www.medicalnewstoday.com/articles/antibodies-fight-off-the-new-c...?
https://directorsblog.nih.gov/2020/07/28/immune-t-cells-may-offer-lastin...

Professor Tim Spector does an excellent job
Category: Blood tests

Replies: 6

Last updated: 6 November 2021
Rick B on 1 August 2021

Category: Uncategorised

Replies: 24

Last updated: 4 November 2021

Some Expertise Needed - TFR
by Rick B (Nov 4)

Thanks, Kat. My new onc is started me at 400 mg Imatinib, monitoring every 4 weeks for BCR-ABL and other blood test. Once I reach 0.1, she will back off to a less frequent monitoring. She says

by kat73 (Nov 4)

Rick - You must be SO disappointed. And now you have to start with a new person and all that entails. Listen, hang in there and hang onto your optimism. Try hard to make yourself

by Buzzm1 (Nov 2)

Rick, see if your new onc is amenable to restarting you on Imatinib 100mg. When CML is at a low level, which yours still is, a low TKI dosage will typically suffice in getting you back to

by Rick B (Nov 2)

Buzz, not good. My October 18th PCR test came back 0.4243, which actually is where it was just 4 months into treatment back in 2018. My hematologist has left to go join the Cleveland Clinic. I have
Category: Uncategorised

Replies: 24

Last updated: 4 November 2021